My Story of Lyme Disease

This is my story of Lyme Disease. It was June 2007, I was on my way to New York City for a doula training. Arrangements and “spreadsheets” for the kids’ schedules were taken care of and I had three days to immerse myself in something I love. I had dinner plans to visit friends in NYC and was happy to be staying with my brother and sister-in-law.

The first morning I woke up stiff and creaky and moved myself through some yoga poses and stretches to relieve the pulling. I just felt “off” and tight with underlying soreness through the day, as if I may have been about to get sick.

The second night, I woke up in the middle of the with painful aching all over. What I’d put off as stiffness from an unfamiliar bed didn’t fit with this growing pain. Yet, I stretched in the predawn hours and again after halting dozes. I got through another day, still enjoying the training but increasingly distracted from my achiness. I met a friend for dinner, excited to see her I didn’t want to cancel, but I was struggling.

By the third night, barely sleeping, tossing in pain and sweat and chills, I really knew something was wrong. That day a woman in the training did reiki on me, another massaged my back, nothing relieved the pain. The trainer (my dear friend Debra Pascali Bonaro) suggested I lay down on the bed in the room adjacent to the training where I could listen from a horizontal position.

I vividly remember the emotions I had sitting in Penn Station alone, waiting for my train. I felt grateful that at the last minute, I’d decided to take the train instead of driving. I couldn’t believe how dramatically different I felt with each passing day. I hunched on a bench rocking myself and trying anything to distract myself from the pain. The train ride to New London where my Dad met me was excruciating; I curled up and tried to be still, tried to rest. I don’t know how I drove the last leg of the trip to get myself home.

The next day, I called my doctor, showered, hoping to find relief, and crept my way in to see the nurse practitioner. After my exam, clutching the prescription for an antibiotic (ultimately the wrong kind as much is misunderstood about Lyme), I went to the lab. At the lab, the nurse happened to be a bit snippy and impatient; I remember this because when I tried to answer her I started crying and crying. Right there in the lab, a waiting room full of people, I cried and mumbled through the tears. She softened. When I was finally on my way, I wasn’t functional.

The nurse practitioner had suggested Lyme as one of the possibilities and was testing for it. Having grown up in Connecticut I knew about Lyme disease and the havoc it can wreak. I can’t remember how I came to know about her, but there was a Lyme specialist in Madison, CT who fit me in to see her. I sat in her office, with my files and lab results in my lap waiting. The words most imprinted in my head are, “In the summer, anything that feels like the flu is Lyme until proven otherwise.”

We switched my antibiotics which left a horrible, persistent metallic taste in my mouth for months. I was constantly fatigued, not at all myself and had a permanent headache. I rated it a “10” and had a “10” or “10+” headache at all times. I had to live and function with it. I’m a mother, we don’t get sick leave. After the long course of powerful antibiotics, I was still symptomatic. We began another.

Having Lyme Disease connected me with so many others who also had suffered, or were still struggling, with Lyme and it’s effects. One woman was pregnant with undiagnosed Lyme, her daughter, 11 years later, still suffers with chronic Lyme (one of the controversial aspects surrounding Lyme Disease). This same woman had a doctor drill through her skull to relieve pressure in her brain because of symptoms related to Lyme but that were credited to brain issues. She had an unnecessary brain procedure because of misdiagnosed Lyme Disease.

The disease is insidious and masks itself as other illness, hides itself and lurks. These stories and so many others made my story of Lyme Disease a breeze by comparison. I feel grateful and lucky that it appeared that mine was caught and treated appropriately early. Even though the Lyme seemed to have triggered that constant headache which didn’t diminish once treatment was through, I was lucky. After a spinal tap that gave me a worse headache than any they were trying to diagnose, I was told my spinal fluid was clear of Lyme, I was lucky. Ultimately, the thing that relieved and reversed my constant headache was acupuncture.

I never had a rash or a telltale bulls eye marking (only about one third of people infected get the ring). I’ll always test positive for the antibodies for Lyme. I’m still in the garden and yard, but I’m much more prudent about checking and watching and learning. Stay tuned for my post on how to protect your kids (and yourself) from Lyme Disease.

3 Responses to My Story of Lyme Disease

[…] most important way to protect your kids from Lyme disease is knowledge. I shared my story of Lyme Disease as well as the controversy and misunderstanding surrounding Lyme. Within this swirl of confusion, […]

[…] We met in 2007 in New York City at a doula training, as the workshop progressed, I felt achier and sicker and on the last day, I listened to Debra lying down with my eyes closed. (It turned out I had Lyme Disease). […]